On October 16, 2020, I had a brain surgery (craniotomy and endovascular procedure, after failed embolization) for an aggressive intracranial dural arteriovenous fistula (Cognard type V, Borden type III) on my spinal cord, from the cervicomedullary junction to C7. Contrary to most members of this community, it was an emergency procedure, therefore everything went fast and I didn’t have much time or choice.
While the surgery was a success, the 3-month post-op scheduled angiogram was never performed and I never received assistance for my rehabilitation regarding learning how to walk again. I had to do a lot of research so that I find tools to help me regain some mobility; the information I received from this group was very helpful too.
My Life has drastically changed since then: I had to learn how to walk again, I have bladder and bowel issues, and muscle weakness. Although my walking is improving, I still need to use a cane or walking sticks, because I lose my balance and I get tired after a while. Despite all this, I am confident I’ll be able to walk “normally” without any aid in the long run. Patience and consistent effort are key.
Here is a list of a few useful things I did to help me:
I waited 4 months after the surgery before using any device, because I was very weak, and I couldn’t stand being touched. Everything hurt, from droplets to light touch.
- I bought a TENS/EMS Unit to reduce the pain in my shoulders/back/pelvic floor and stimulate the nerves and muscles in the abdominal area (for constipation) and on my back. Thanks to this tiny device, I was able to stop taking pain relievers. (It’s available on Amazon.)
- I bought a massager to deal with the pain in my legs, back and shoulders. However, massaging was not a good tool for me because it hurt too much and my body ached a lot. Even after 8 months, I still don’t use it that much. (It’s available on Amazon.)
- After receiving the approval of my surgeon (8 weeks post surgery), I started to do Yin Yoga exercises and Pilates I found on YouTube. For 4 months, I did Yoga, Pilates and stretching exercises every day, 3 of 4 times a day. Now I stretch twice a day, every day.
- I bought a vibration plate, after a member of this group mentioned whole body vibration therapy in her post. I did some research first, in order to see if this device was appropriate to my case. I started using the vibration platform early in May, and it gave me a boost almost immediately. Before, I had a hard time walking without using my walking sticks after the 1-kilometer mark. Since I started using the platform, my endurance and gait have greatly improved: I walk 2 km without sticks almost pain free; I walk 3 km without sticks with some pain; I can walk more than 4 km with the sticks and some pain. I had to start using the platform gradually, because the device I bought is very powerful and intense. I use it every day, three times a day, for 30 min in total (or more if I don’t stand or sit on it). It helps with balance, muscle building, endurance, relaxation, etc. It’s a huge investment, but I am so happy I made it, because I have tangible results. (You can buy this type of device on Amazon.)
- I swim twice/three times a week for 45 minutes at my local swimming pool. I wear fins and use a kickboard, as I just started again. My goal is to get enough strength and endurance to be able to swim without aids.
- Meditation and self-hypnosis
- Free-style dancing
I take no medication, but some Tylenol or Advil when the pain is too intense (very rare). I walk at least 2 km/day, every day; I exercise every single day (resistance training, weight lifting, cardio training, stretching, Pilates, Yoga). No rest days, unless I’m sick.
Improvements are VERY slow, but they are here. My aim is to walk 5km without sticks and pain free, on top of going back to dancing. I used to dance a lot before my surgery, and dance is an essential part of my life, because it helped me overcome serious mental health issues in the past.
I try to maintain a positive outlook on Life and avoid thinking about the future. I make no plans in the long run. I take one day at a time.
PS: I’ve been on disability leave since my surgery.